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MED. ETHICS 286, 286 (2002); Florencio, supra note 38, at 541 (“Until the risks of significant genetic tampering are better understood, primum non nocere should be our guiding principle.”); Sonia M. Suter, A Brave New World of Designer Babies?, 22 BERKLEY TECH. L.J. 897, 960 (2007); Vacco, supra note 68, at 1224.
Alvaré, supra note 65, at 54. Helen M. Alvaré is an Associate Professor of Law at the Catholic University of America, Columbus School of Law. Id. at 43.
the limits of science to understand how genes express themselves and can be manipulated. It is not difficult to imagine that as genetic technology matures, there are those individuals who would choose to utilize ART techniques, such as PGD or even germline genetic engineering (genetic manipulation of sperm, eggs, or an embryo),75 even though they do not strictly need these measures to conceive.76 What then might stop some individuals from manipulating every aspect of their children that is within their power to control?77 Professor Alvaré summarizes what can be considered a more traditional view of parents as “recipients of a very vulnerable gift, as lovers of an unknown person.”78 This stands in contrast to the view of children as “products” of the parents who create them.79 Nearly all parents have certain expectations for their children, but as Professor Alvaré notes above, parents who are capable of controlling the genetic makeup of their children may have expectations beyond those of typical parents for the children’s behavior or even who they should grow up to be.80 “Conditional parenting” exists where “children live out the possible self-serving preferences of their parents,”81 but in all such instances, it is still possible for children to grow up to rebel against their parents’ wishes and enjoy their own Although human germline genetic engineering is not illegal in the United States, the American Association for the Advancement of Science placed a moratorium on germline genetic engineering in 2000, and it has been in effect since then. Therefore, “[g]ermline gene therapy is not being actively investigated
in larger animals and humans for safety and ethical reasons.” American Medical Association (AMA):
Gene Therapy, http://www.ama-assn.org/ama/pub/category/2827.html (last visited Jan. 16, 2009).
Vacco, supra note 68, at 1193-1200.
Alvaré, supra note 65, at 59.
Collaborative reproduction is a choosing of traits with the child’s creation directly and solely in mind. Like cloning also, the techniques of collaborative reproduction open the door to genetic manipulation; once the embryo is ex-utero and available for inspection and even alteration, the scientific and medical imperatives toward health and improvement become difficult to resist.
Id. at 54 (emphasis added).
unique life experiences.82 But, where the parent is able to select for certain genetic traits, the parent has left an indelible mark on the child that will remain with the child for life.83 Children who are aware of this may feel pressure to meet their parents’ expectations, knowing they were made to do so.84 Or they may not have any choice in the matter, being afflicted with a genetic condition that cannot be repaired.85 In the example of the deaf couple mentioned in Part I.A., one of the children was born with partial hearing in one ear.86 The child’s doctor recommended a hearing aid at an early age to give him the greatest opportunity to learn spoken English.87 The couple did not permit this, stating that they would permit him to have a hearing aid when he was older if he so desired.88 But would the child choose to do so knowing that his parents underwent procedures in an express effort to produce a deaf child and knowing his parent’s strong belief in the idea of the deaf culture and community?89 Even if he eventually decides to act independently and wear a hearing aid, he cannot escape the additional difficulty that he will experience in learning language as an older child or an adult—deprived as he was during the prime opportunity to learn a spoken language when he was too young to express a desire one way or the other.90 Whether or not he chooses
FRANCIS FUKUYAMA, OUR POSTHUMAN FUTURE: CONSEQUENCES OF THE BIOTECHNOLOGY REVOLUTION94 (2002).
Ziker, supra note 43, at 5 (noting that not only will this mark remain with the child for life, but “a parental genetic change not only alters the current offspring, but also ‘forever alters future generations’” (quoting Larry Thompson, Poll Finds Support for Use of Gene Therapy, WASH. POST, Sept. 25, 1990, at Z9)).
Vacco, supra note 68, at 1225.
See Ziker, supra note 43, at 5-6.
Merle Spriggs, Lesbian Couple Create a Child Who Is Deaf like Them, 28 J. MED. ETHICS 283, 283 (2002).
Id. (citation omitted).
See id. (“Like many others in the deaf community, the couple don’t view deafness as a disability. They see deafness as a cultural identity and the sophisticated sign language that enables them to communicate fully with other signers as the defining and unifying feature of their culture.”).
to wear a hearing aid, the choice as to whether he could hear naturally was made before he was born, and, barring advances in medical science, he will live with that choice for the rest of his life regardless of his own wishes.91 A counterargument to this is that selection for certain genetic characteristics, including disability, is merely part of an effort to produce a child that shares significant aspects of the parents.92 Because this is a legitimate goal of parents who conceive naturally, it should not be an illegitimate goal for parents who conceive utilizing PGD to screen in favor of a disability.93 As for the deaf couple, there are some who believe that deafness is not a disability but a unique culture worth preserving and advancing by bringing deaf children into the world deliberately.94 In that sense, having a deaf child is no different than having a child and bringing the child up in the parents’ ethnic or national culture, something that all parents do whether they conceive naturally or from ART. However, this still appears to be a minority view even among the disabled, and in addition to commentators like those mentioned above who hold that selecting for disability is still “diminishment,” there are those who do not believe that having a disability is a condition for being a member of a particular group or culture.95 Professor John Robertson has argued that positive alteration of a child’s genetic makeup from genetic engineering fails to serve important reproductive goals.96 He argues that for such techniques to be constitutionally permissible, parents would have to
N. Levy, Deafness, Culture and Choice, 28 J. MED. ETHICS 284, 284 (2002).
Antsey, supra note 73, at 287.
Robertson, supra note 51, at 474. John A. Robertson holds the Vinson and Elkins Chair at the University of Texas School of Law at Austin. He has written and lectured widely on law and bioethical issues. He is currently Chair of the Ethics Committee of the American Society for Reproductive Medicine.
University of Texas at Austin: School of Law Faculty & Administration, http://www.utexas.edu/law/faculty/profile.php?id=jr43 (last visited at Jan. 16, 2009).
show that any alteration is not being made out of mere preference “but is essential to whether they will reproduce [at] all.”97 In one of his articles, Professor Robertson was referring to genetic enhancement,98 but the same logic can be applied to intentional diminishment, which has no arguable purpose except as an expression of the parents’ desires for a disabled child. At the same time, under Professor Robertson’s reasoning, prospective parents would still be entitled, under the procreative liberty, to select for a genetically disabled child if that is a condition to their having a child at all.99 Of course, such a determination requires the effort of looking into the intentions of prospective parents for having or not having children,100 something that would not only be difficult but is also not constitutionally permissible.101 A more confounding argument is presented in the idea that in deliberately creating a disabled child, parents are perpetuating a “wrongful life,” a notion that one commentator refers to as a “metaphysical conundrum.”102 An action for wrongful life is generally understood to be one that is brought on behalf of a child who is born with a disability against the medical provider for failing to provide the parents with sufficient
Planned Parenthood v. Casey, 505 U.S. 833, 852-53 (1992) It should be recognized, moreover, that in some critical respects the abortion decision is of the same character as the decision to use contraception, to which Griswold v.
Connecticut, Eisenstadt v. Baird, and Carey v. Population Services International afford constitutional protection.... They support the reasoning in Roe relating to the woman’s liberty because they involve personal decisions concerning not only the meaning of procreation but also human responsibility and respect for it.... These are intimate views with infinite variations, and their deep, personal character underlay our decisions in Griswold, Eisenstadt, and Carey.
Alan J. Belsky, Injury as a Matter of Law: Is This the Answer to the Wrongful Life Dilemma?, 22 U.
BALT. L. REV. 185, 187, 222 (1993) (“In theory, the wrongful life action provides the framework upon which a child may recover pecuniary (special) and nonpecuniary (general) damages after convincing the trier of fact that she would have been better off not having been born than to live life with severe disability.” (citation omitted)).
information to make an informed decision about whether or not to carry full-term or terminate a pregnancy.103 The difficulty of wrestling with the metaphysical implications of wrongful life led courts to dismiss it as a valid cause of action for over a decade after it was first brought to court,104 and courts refused to recognize the tort until 1978.105 The central difficulty in wrongful life is identifying the harm that the child born disabled has suffered. A child born without a disability is, by most, considered better off than a child born with a disability. But what of a child who would not be born but for the disability? Critics of a regulatory approach toward PGD can argue that if a child would not be born but for the use of PGD to select a disabling characteristic, is the child that is born as a result truly in a worse position than the child would have been not being born at all?106 The difficulty in answering that question is what prompted many courts to avoid answering it at all for over a decade. How is there harm in a disabled existence, even when that existence is accompanied by physical or mental limitations, when compared to no existence at all?
The difficulty posed by this question is plainly at odds with what appears to many to be a clearly harmful act—the decision to knowingly select for a disabled child when it would be possible to bring a perfectly healthy child into the world instead.107 It simplifies matters somewhat to consider cases in which a child is deliberately afflicted with a disease that makes life not worth living, such as a condition that will lead to an
Dennis J. McCann, Liability for Negligent Prenatal Diagnosis: Parents’ Right to a “Perfect” Child?, 42 OHIO ST. L.J. 551, 557-58 (1981).
Becker v. Schwartz, 386 N.E.2d 807, 813-14 (N.Y. 1978) (holding that the parents of a developmentally disabled child can recover pecuniary losses for the birth of the child).
Robertson, supra note 51, at 486.
early death or a condition that makes the child incapable of experiencing the world.108 In such instances the harm done to a child by bringing the child into the world in a disabled condition may be more than the harm of non-existence by any reasonable standards.
However, none of the aforementioned examples involved parents trying to bring children into the world that would experience lives of suffering so great that they would be better off having not been born.109 Deafness, dwarfism, and Down syndrome are not conditions that destroy the possibility of the enjoyment of life in some capacity.110 However, nothing in the current regulatory scheme would prevent parents utilizing PGD from selecting an especially debilitating or lethal condition.111 Opponents of regulation may argue that it is impossible to imagine that any parent would deliberately bring a child into the world that was fated to suffer a short and painful life, but proponents of regulation point out that there are no statutes to prevent just that.112 At the same time, neither are there statutes that prevent a couple from bringing a severely disabled child into the world so long as they conceive the child naturally, even if they are aware of the high odds of conceiving a disabled child because of their own personal genetic makeup—a disparity that opponents of regulation could decry as unfair for the duty it imposes upon prospective parents utilizing PGD that is not imposed upon those who are not.
However, it is possible to construct a counterargument to the wrongful life conundrum. Alan Belsky, managing partner of Belsky, Weinberg, & Horowitz, LLC, Belsky, supra note 102, at 230-31.
See supra Part I.A.
See Suzanne Levant, Comment, Natural Death: An Alternative in New Jersey In Re Conroy, 98 N.J.
321, 486 A.2d 1209 (1985), 73 GEO. L.J. 1331, 1348 (1985) (stating that Down syndrome does not make the enjoyment of life impossible); see generally Adrienne Asch, Critical Race Theory, Feminism, and Disability: Reflections on Social Justice, and Personal Identity, 62 OHIO ST. L.J. 391 (2001) (discussing deafness as a “community” and the ability of a deaf person to enjoy life).
See Stankovic, supra note 37, at 5-6 (discussing federal regulations, including that the FDA does not regulate fertility procedures).
See id. at 4.